Given the increasing number of older persons relative to the working age population, record level taxes and baby boomers’ demands for self-determination and quality of life, which changes might the Scandinavian welfare model have to undergo in order to deliver long term care to all who need it? In Sweden, direct payments for personal assistance are paid to mainly younger persons with extensive disabilities. In terms of perceived quality and cost per hour of service, direct payments have been found to be more efficient than traditional local government services. But would this favorable experience hold for all persons in need of assistance with the activities of daily living – regardless of age, diagnosis and minimum needs? What would be such a policy’s cost and effects on the labor market? How could it be financed? Would it threaten younger disabled persons’ relative favorable present situation? Today’s Swedish policy of cash payments for the purchase of personal assistance services might be of interest as a long term care solution for tomorrow’s older persons.

The Independent Living Institute (ILI, Sweden) Sweden has written this report on Personal Assistance in Sweden for the Expertise Centre Independent Living, Flanders, Belgium.We gave ILI a list containing questions and topics on hot issues in Flanders. What is the legal framework? How does the assessment take place? What is the assistant's statute? What are the experiences with private enterprises? In this report, Kenneth Westberg answers these questions. He has written this report under the guidance of PhD. Adolf Ratzka.PDF

Municipal contracts should be based on the Norwegian Standard and the basic philosophy of user-controlled personal assistance, with the user as supervisor and the freedom to use assistance hours at any time. The upcoming legislation for user-controlled personal assistance (Brukerstyrt personlig assistanse, BPA) should cover everyone regardless of number of hours needed or diagnosis. These are the demands of Bente Skansgård at ULOBA, Norway’s largest assistance cooperative.

Interview with Jan Andersen, Lillehammar University College, Norway on November 17, 2011
Norway is discussing whether or not to pass legislation about user-controlled personal assistance. Researcher Jan Andersen at Lillehammer University College, who has conducted research on user-controlled personal assistance since its inception, sees problems because legislation would only apply to users with more than 20 hours/week. He also comments on the changing assistance market, with the entrance of private companies and municipalities contracting out assistance to keep costs down.

In Norway, JAG Assistanse has four users to date, but after gaining approval as a BPA provider (Brukerstyrt Personlig Assistanse or user-controlled personal assistance) from 15 municipalities, operations manager Sidsel Maxwell Grasli expects strong growth. At the same time, she fears that JAG’s target group will be let down by the upcoming Norwegian legislation for user-controlled personal assistance.

Switzerland is on the brink of a breakthrough: it will offer nationwide direct payments for personal assistance beginning in January 2012. Over the next few years, 3,000 people with disabilities are expected to receive this assistance benefit.

The October 1 2011 article Dismantle Europe's inhumane institutions in the daily newspaper Göteborgsposten urges European countries to provide people with disabilities with personal assistance and assistive devices, rather than relegating them to institutions.

According to the Swedish Members of the European Parliament at least 1.2 million people live in institutions in the EU and Turkey, which they consider to be contrary to the UN Convention on the Rights of Persons with Disabilities.

Interview with Bente Skansgård, ULOBA on January 18, 2011.
User-controlled personal assistance was implemented in Norway in 2000. The municipality has the monopoly in granting the intervention as required and has a strong influence on how assistance is organized—for example, by determining who can employ the assistants.

In Latvia people with disabilities who do not have their own financial means or cannot get help from relatives usually live in an institution. A small subsidy is available to pay a personal assistant, but it does not go very far. Irina Parhomenko works at APEIRONS, which is dedicated to ensuring that personal assistance legislation becomes reality.

In Flanders all personal care assistants are employed by the people they assist. 5500 people are queuing to get personal assistance in the Belgian region of Flanders. A little less than 1800 have so far been granted personal budgets to employ their own assistants. There are organizations that provide administrative support and advice for those that want it.

Spain has had a law declaring personal assistance to be a right since 2006, but the law is not applied in practice. Instead there are various pilot projects. Catalonia has two such projects, one at the regional level and one operated by the Independent Living movement in the city of Barcelona.

Only about fifteen people receive personal assistance payments in Iceland, but new legislation is under discussion and interest is rising. According to representatives of the newly formed NPA Center cooperative, however, there is resistance within the disability movement. In addition, the personal assistance agreements may be too miserly because of the economic crisis. Today special housing solutions dominate the scene with common personnel groups, where according to Embla Agustsdottir from NPA Center, it is hard to live an independent life.

The experience of two people using a direct payment to employ a Personal Assistant.
‘Direct Payments’ is a generic term used to describe the provision of funds by the State, directly to people with disabilities, for the purpose of purchasing a range of supports and services. These services typically include personal assistance, therapies, and aids and equipment. Direct payments enable people with disabilities to employ individuals, directly or indirectly, to assist
them with their everyday tasks.

Arthur Klimchenko lives with his parents in the Russian city of Kaliningrad, he would like to leave home, but says that it is not possible because of his finances and his disability.
When personal assistance is described for him, he sees the benefits, but he is also afraid that the assistants would decide over him, because of how persons with disabilities are viewed in Russia. He is also afraid that many disabled would stop doing what they are capable of doing and just exist, eating and sleeping.

In Kaliningrad there are no home help services, people who need practical help but cannot get help from relatives or friends live in institutions. Sergey Kiselev, Chairman of the Apparel would like to see personal assistance introduced in Russia.

During the weekend of November 14-15 2009, before the European Union's Equality Summit, the Independent Living Institute hosted an international seminar in Stockholm with participants representing Independent Living organisations from Finland, France, Iceland, Ireland, Norway, Slovenia and Sweden as well as the European Network on Independent Living, ENIL.
We discussed the need for starting a Europe-wide network on personal assistance. Participants analysed the issues facing personal assistance users across Europe today as well as the tools and resources at our disposal for meeting them.

In most European countries the most common assistance for people with disabilities is provided by relatives, we can easily understand that this system has weaknesses. The trustful relationship makes it work but :
-family members, especially parents, are getting old and can't help eternally their child or relative with disabilities
-children that help a parent with disability have to handle with too much important responsibilities and too young
-relationship partners can't sacrifice their career for the other and can't fear to sign for a life-long 24hour job
-assistance with filial feelings most of the time leads to unequal relation
-hiring external assistants is considered as an abandonment if relatives worked before as assistants